Some people reported that they were having problems moving to the following page in this online survey.

The IT team has been looking into these software glitches, and they apologize for any inconvenience. They also suggested that it was best to do the survey on a computer; they found that tablets could be very slow, and phones are somewhat faster but they do not show the complete question on the screen (so that could be a hassle). Also remember EVERY QUESTION NEEDS AN ANSWER, even if it is NO, or not applicable or decline response.

Women suffering from this disorder are invited to participate, as your input is of great value. Check out the link for more information: http://pgad.sexlab.ca/

Dr. Caroline Pukall has been receiving various questions from women who want to participate in the Survey. She agreed to share these questions and her replies with groups on forums or social media who had been invited to participate.

Q: What do you hope to accomplish with this study?

Dr. Pukall: The purpose of the survey is to understand the experiences of women with PGAD in many ways – in terms of symptoms, treatments, and function. With the results from this study, we would like to educate health professionals and the public about this distressing disorder, and understand its complexity so that we can develop effective assessment and treatment strategies.

Q: What is your background that makes you interested in studying women like us?

Dr. Pukall: I have been thinking about PGAD ever since I read the first paper on it in 2001. Shortly afterwards, I saw a client with PGAD through the therapy service in which I worked as a graduate student at McGill University. I was struck by many parallels between PGAD and vulvodynia (medically unexplained vulvar pain, which I was studying at the time): the lack of acknowledgment by health professionals, the fact that this client was not taken seriously by anyone she told about her symptoms, the lack of information about the condition and how to treat it, her feelings of being utterly alone, her extreme shame in her symptoms, the fallout in her mood and relationships, and her desperation for validation. It was obvious to me at the time, studying vulvodynia in the way that I was (by examining self-reported symptoms, sensitivity, and brain activity), that we absolutely needed to look at this complex condition in an equally complex way to educate, assess, and treat. We have made many significant inroads in the world of vulvodynia, and would like to help do the same with PGAD.

Q. Why are men not mentioned anywhere in the online survey first page?.... everything seems to be directed at women, when there are several men with PGAD as well?

Dr. Pukall: We plan to study men with PGAD in the next online study that will likely start in the fall of 2016. We are looking forward to learning as much about PGAD as possible in women and men.

Q. When will this Survey close?

Dr. Pukall: The study will end in Feb - March 2016. I think that is a reasonable time estimate to ensure that we have time to get the other groups (control and vulvar pain only).

Q. Why is it taking me longer than 90 minutes to complete the Survey?

Dr. Pukall: We obviously miscalculated how much time it would take. From the responses to the survey that we have seen so far, I see why it has been taking so long: The rich detail that we have received so far is so very valuable for the study. I cannot express my appreciation enough for your dedication and your efforts. Thank you so very much. This study wouldn't be worthwhile without your input. We are learning so much.

Researchers have extended this Survey until April 22, 2016. The more women sufferers who participate, the greater value the results - better understanding of the disorder, better education for doctors and the public, and eventually better treatments.